Part 6: Courage and experiments

December 2022 - January 2023 (Month 12-13)

December and January in our family (and many other families with kids) always brings a lot of planning and work. Coming off the heels of my lowest symptom month in November, I was feeling pretty confident about all of this though. It was a bit daunting for sure, but with pacing as my mantra, I felt like I could do it. The agenda was full: Saint Nicholas Day (Nikolaustag), then Luisa’s birthday, and a birthday party to follow, school-sponsored Christmas events from two different schools, Christmas festivities with the family, Christmas dinners, New Years celebration, and then Sabine’s birthday and related events shortly after in January. It’s a lot. It’s a lot of shopping, running around preparing for food and drink, taking kids to events, and trying to squeeze in some fun times at the Christmas Markets here in Berlin too.

Around mid-December, I was getting pretty fatigued again even with some pretty decent pacing work. I was having a lot of complete crash days after days with more activities, and frankly, I was fucking sick of it. A lot of people have commented so far about how my attitude has been so positive. How I’ve been able to maintain a sense of humour and find perspective amongst my struggles, and I do feel that way too. But being human, I was also sometimes losing my shit. It happened a lot in the previous year. And it’s not just the illness-induced anxiety and stress and wacko adrenaline and hormones from my messed up nervous system (although that would be enough to do it). Chronic illness depression is real, as is the grief, anger and frustration that comes along with it all. So perhaps in a moment of frustration or perhaps it was courage (not that it really matters), I decided it was time to start taking some chances.

The first thing I knew was that the fatigue got worse when I started the beta blocker back in August 2022. Since around April 2022, shortly after my dysautonomia and POTS hit, I was also taking an anti-anxiety medication called Opipramol (used only in Europe it seems). It helped a lot with the anxiety, but it also was a source of fatigue and tiredness. So, I decided to experiment. I cut my dose of Opipramol back, I played with the timing of the beta blocker and Opipramol doses, I tried more beta blocker, I tried less beta blocker. It was a pretty messed up couple of weeks with side effects raging and my body having to adjust to my constant fiddling with medication. I wouldn’t recommend this strategy of regular changes, but I was impatient. And it worked, kind of. What I learned from this was that timing and dose matters. I took less Opipramol to reduce its’ fatigue effect, and it turns out that there was a small but noticeable interaction between Bisoprolol (the beta blocker) and Opipramol. Taken together, the Opipramol was stronger and the Bisoprolol was weaker than when taken apart. So by reducing my Opipramol dose, and taking it an hour after the Bisoprolol, the effects of the Bisoprolol were actually increased and the fatigue was reduced. A small victory, but the effect was noticeable and with a bit more energy, I even made it to a Christmas Market, complete with 1.5 hours of walking around, standing, and no rest breaks to lie down. FUCK. YES.

The Sankt Lucia Markt at the Kulturbrauerei — we did it!

I was pumped. This illness (and many chronic illnesses) are beasts that are difficult to tame, let alone even make a positive impact on. It’s a lot of waiting around for your body to figure itself out and things like overactive immune systems to somehow “calm down”. So finding anything that has a positive impact, even a small one, is a very big deal. Experimenting is so alluring, and always has been during this process. “What if I just try this supplement, or just try this medication, maybe that’s the thing that will make the needle move.” But it’s like trying to use a shotgun to kill a fly on the wall — you can shoot a lot of pellets, but none might hit your target. This is a tempting approach in the Long COVID community as well, and I’ve seen a lot of peers go through this phase of trying as many supplements and diagnostic tests as possible. At least with medication and supplements though, you need time. Pick one thing to try, start, wait, observe, and then adjust. It’s hard to do, I struggle as well, but throwing everything at the wall will just lead to confusing side effects, strange interactions, and possibly no intended effect at all. But oh man, it’s so hard to not just try all the things.

In January, after a particularly rough multi-day crash after Christmas and New Year’s Eve, I took another chance. I had another beta blocker that I had wanted to try called Nebivolol. It was a newer generation of beta blocker and the bonus of this particular one was that it was supposed to not have the usual side effect of fatigue and exercise intolerance (PEM with exercise or just no ability to exercise). It was supposed to even boost energy by affecting the nitric oxide in your blood. With the change I felt after these very minor adjustments to my Bisoprolol and Opipramol, I thought, what can I lose. In the worst case, I feel shitty for a couple weeks then go back to the medication that I know. The devil you know vs the devil you don’t. Game on. I switched one day from Bisoprolol to Nebivolol and…oh wow. It’s is a tiny amount of medication we’re talking about, just 1.25 mg of Bisoprolol or Nebivolol, but what a huge effect it had. I had energy! I could do stuff! I disassembled some old wardrobes (Ikea PAX Kleiderschrank), I “built” some Ikea cabinet doors, I went on walks, I could vacuum and cook and clean all in the same day. I clearly still had limits and crashed pretty hard afterwards, but I could do it. And I didn’t feel awful the next day. What. Is. Happening.

Destruction and construction. Small thing for you, major thing for me.

Naturally, I kept on with this Nebivolol. Now for the devil you don’t know. It had the intended effect of keeping my heart rate down and stable, and it had the bonus effect of more energy than before, but it had side effects, oh those fucking side effects. Brutal headaches, restlessness, poor sleep, and just this persistent feeling like I needed to lie upside down (don’t ask). I managed a couple of weeks like this, even trying to cut the pills down to lessen the effects, but it just wasn’t working. When evaluating these kinds of medications, it’s really all about the net effect. Since they’re only used for symptom management, there’s really no harm to your body if you take slightly more, less, or none at all. But if the net effect of the medication is that your quality of life is worse, it doesn’t really matter if the intended effects (and bonus effect of more energy in this case) are better. I had to stop and it was back to the devil I knew. It was ok though, because I came out of these experiments with some very intriguing lessons learned, and an improvement in fatigue over November. Let’s call this a win.

From my kids, for Christmas ❤️

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Part 7: First, the storm